FAQs: Family Risk and Screening | BeyondCeliac.org
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FAQs: Understanding Your Risk & Celiac Disease Screening

It’s important to speak with your healthcare provider about your questions and concerns surrounding celiac disease testing. Tips and information on having a conversation with your doctor about testing can be found in the Beyond Celiac Talking to Your Doctor guide.

Don't see your question answered below? Send it to Beyond Celiac so we can add responses here to the most commonly asked questions.

Why can’t I just go gluten-free and see how I feel?

Celiac disease is a serious genetic autoimmune disease that requires lifelong management and follow-up care from an experienced medical provider like a gastroenterologist. The gluten-free diet can be restrictive and there is no science-proven reason to go gluten-free unless you have an  underlying medical cause like celiac disease. Going gluten-free without first properly getting tested for celiac disease will make it more difficult to receive an accurate diagnosis down the road. That’s because the celiac disease blood test requires you to be on a normal, gluten-containing diet.

What’s the celiac disease testing and diagnosis process like?

The testing process begins with a simple blood test – the tissue transglutaminase (tTG). If the result is positive, a follow-up biopsy of your small intestine will be needed to confirm the diagnosis. Your diagnosed family member can give you more information on the process and share their own experience with you.

What blood tests should I ask my doctor for?

You should ask your doctor for the following:

  • Total immunoglobulin A (Total IgA)
  • Tissue Transglutaminase (IgA-tTG)
  • Endomysial Antibody (IgA-EMA)
  • If IgA is deficient, it is recommended that the IgG/IgA-DGP (deamidated gliadin peptide) also be ordered. IgG-AGA can also be ordered.

Can my primary care doctor order the blood test? Are there other doctors that I can talk to about testing?

Your family doctor or primary care provider can order the celiac disease blood test for you. You can also schedule an appointment to speak with a gastroenterologist experienced in treating people with celiac disease. Additionally, if you already see a specialist such as an endocrinologist or rheumatologist, he or she may be knowledgeable about celiac disease and are likely to order the blood test as well.

What if my doctor doesn’t think that I need to be tested?

Use the Beyond Celiac Talking to Your Doctor guide to help you get the conversation started and demonstrate the need for and your interest in celiac disease testing.  If your doctor is still hesitant to order the blood test, Beyond Celiac encourages you to consider finding a gastroenterologist experienced in treating celiac disease instead. Your diagnosed family member should be able to help you navigate this process.

Unfortunately, there are physicians who are not knowledgeable of celiac disease and its many signs, symptoms and risks. While awareness among medical professionals and the general public is growing, it is important to work until you find a doctor that will help you quickly and easily navigate the testing process.

What happens if my celiac disease blood test comes back positive?

If your blood test results come back positive, your doctor should recommend getting an intestinal biopsy to confirm the diagnosis. This is an important step in the diagnosis process.

Should your blood test and biopsy indicate you have celiac disease, Beyond Celiac will be with you every step of the way. We offer a free, comprehensive guide that will help you through a positive diagnosis, if that time comes. The Beyond Celiac resource, Getting Started: A Guide to Celiac Disease & the Gluten-Free Diet can be found at www.BeyondCeliac.org/GettingStarted.

My celiac disease blood tests were negative. Do I still have to worry about getting it?

The short answer is yes.

Celiac disease can develop at any time and at any age, even if a previous blood test or small intestinal biopsy was negative. If you are a biological relative of someone with celiac disease, you are genetically at-risk and need to be tested every 2-3 years or sooner if symptoms develop.

I’ve heard that you don’t have to have any symptoms to be diagnosed with celiac disease. How is that possible?

This is just one of the many reasons that celiac disease testing of at-risk family members is so important. Most people with undiagnosed or misdiagnosed celiac disease do not have any symptoms at all. For some of these people, it is possible that they have have become used to feeling a certain way and don’t recognize symptoms like a general fatigue, since that is how they always feel. Many people realize they had various symptoms of celiac disease only after being diagnosed and treating their celiac disease. 

Since celiac disease is controlled by diet, it doesn’t seem like that big of a deal. Is it really something that I need to deal with?

Left untreated or mismanaged without expert medical guidance, celiac disease can have serious and severe long-term health consequences including osteoporosis, other autoimmune diseases (like thyroid disease) and even certain cancers like lymphoma. Receiving a proper diagnosis along with proper follow-up care by a knowledgeable team of healthcare providers are essential to help reduce these risks.

Will my insurance company cover the celiac disease blood test?

The celiac disease blood test is relatively inexpensive and a cost-effective way to screen for celiac disease. Most insurance companies will cover the celiac disease blood test.

Where can I get more basic information on celiac disease and its treatment?

Download the free Getting Started: A Guide to Celiac Disease and the Gluten-Free Diet from Beyond Celiac to learn more about living with celiac disease.

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